Tony is a delight…he has never met a stranger and loves everyone. And it’s a good thing he spent a few years playing baseball because, in his short 13 years, life has thrown him more than a few curve balls.
As an infant, Tony’s parents noticed many birthmarks on his body and at nine months old, he was sent for the first MRI of many to come. He was diagnosed with neurofibromatosis (NF-1), a genetic disorder that causes tumors to form on nerve endings throughout the body. Doctors reassured them that it was not dangerous, though, unless these tumors grew on the brain, optic nerves, spinal cord, organs or in the ear canal. The initial MRI showed no tumors, but just six months later the next MRI revealed bilateral optic nerve gliomas. Then, six months later a tumor on his hypothalamus and one in his chest were found. These tumors were inoperable and Tony had little more than troublesome issues related to them, so doctors chose to just monitor them with quarterly MRIs and vision testing. Unbeknownst to his parents, Leo & Cathy, Tony had been losing vision in his left eye for years in a way that did not appear on typical vision screens. In the Summer of 2003, just before he started Kindergarten, it became clear that he had lost most of the vision in that eye.
At age 5, Tony began chemotherapy in hopes of eliminating the tumors, but within months, he lost all the vision in his left eye. By spring 2004, he was wheelchair-bound due to neuropathy and anorexia, side effects of the chemotherapy, and he missed the whole second half of his kindergarten year. A g-tube was placed for night feedings to help him regain some of his lost weight and physical/occupational therapies were started. After 14 months of chemotherapy, including numerous hospitalizations and blood transfusions, treatment was completed. The tumors had shrunk, but vision in his left eye remained unchanged; however, with the dedication of many rehab workers and his own determination, he was walking with a walker by the time school started again and began the first grade with his class.
14 months later, the MRI revealed tumor re-growth and in August 2006 Tony started chemotherapy treatment again. Although the 12 months of treatment did not shrink the tumors, they did stabilize and treatment ended August 2007.
Less than one year later, new tumors were found and a 3rd 12-month chemotherapy treatment protocol was started. Because of his body’s reaction to these drugs, Tony received monthly platelet transfusions. Then he was diagnosed with precocious puberty for which he had to have painful, monthly shots. When it became available, the endocrinologist switched him to an implant that would slowly administer the medicine over the course of a year so he didn’t have to have the shots anymore.
In May 2009, Tony ended his third chemo protocol. Sadly, only three months later, another MRI revealed more tumor growth that would lead to Tony’s fourth chemo regimen. This new combination of drugs made him so nauseated that he was given medicine so he could sleep through the infusion, which took several hours. Now it prevented Tony from being able to socialize with those in the clinic, something he loved to do. It also caused him to develop an aversion to many common smells, especially cleaners and plastics. He could no longer play with his Legos, had to get new cloth binders for school and even smell coffee beans with cinnamon while he was having his port cleaned and accessed. When the protocol came to an end in December 2010, he was delighted because, for him, it gets harder as he gets older.
Tony is now finishing the 6th grade and doing well in school. He does learn a bit “differently” than the “average” child and Cathy has been fighting for him to receive adequate education since he was in kindergarten, saying that “school is as big a challenge as the medical stuff.” His lengthy history with brain tumors has resulted in complete blindness in his left eye, severe tunnel vision in the right and numerous other side effects such has having to wear leg braces. This all could have led him to be bitter or depressed, yet anyone who has met Tony knows this is not the case. He likes everyone he meets, is the most proficient encourager and, according to his mom, “can’t fathom that there is evil in the world.”